Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Has Anyone Had Any Success With Tso/whipworm And/or Hookworm Therapy?
0

21 posts in this topic

Hi everyone,

I was just wondering if anyone here has tried TSO/Whipworm and/or Hookworm therapy for their Celiac disease. It seems potentially helpful (granted there doesn't appear to be a tremendous amount of research on it). While trying out different diets might ultimately help me, fixing my immune system so I can live a comparatively normal life is far more appealing...

Helminthic therapy

0

Share this post


Link to post
Share on other sites


Ads by Google:

This sounds like one of the worst ideas for treating celiac that I have ever heard of. Please don't try it. If you have celiac it is genetic and those worms are not going to change your genes. Also celiacs have a hard time absorbing nutrients they get from their food until they are healed. The worms are going to make that even harder. The treatment is not approved nor throughly researched. Please don't do it.

2

Share this post


Link to post
Share on other sites
Hi everyone,

I was just wondering if anyone here has tried TSO/Whipworm and/or Hookworm therapy for their Celiac disease. It seems potentially helpful (granted there doesn't appear to be a tremendous amount of research on it). While trying out different diets might ultimately help me, fixing my immune system so I can live a comparatively normal life is far more appealing...

Helminthic therapy

I was wondering how you linked the treatment of whipworms specifically to the treatment of Celiac disease?

0

Share this post


Link to post
Share on other sites
I was wondering how you linked the treatment of whipworms specifically to the treatment of Celiac disease?

Celiac disease is an autoimmune disorder not entirely unlike Crohn's, IBD, etc. and hookworm/TSO appear to function as a sort of gut specific cortisone (similar to endocort) though with seemingly fewer side effects

0

Share this post


Link to post
Share on other sites

While I agree we should proceed with caution regarding parasitic treatments for celiac disease, the argument put forth below is incorrect. Even if it were true that celiac disease is caused by genes (this is probably only a small part of its cause), it would not follow that treatment required altering one's genes. There are genetic contributions to asthma, but we don;t treat that with gene-therapy. I think we should be open-minded about hookworms' (and other parasites') potential to treat autoimmune disorders. Sure, it's gross to think about having worms in your intestines, but the side effects (e.g., anemia) are manageable and probably less severe than steroid treatments. For me, I'd rather have worms and be able to eat bagels than to remain gluten-free for the rest of my life. Let's encourage further scientific study...

This sounds like one of the worst ideas for treating celiac that I have ever heard of. Please don't try it. If you have celiac it is genetic and those worms are not going to change your genes. Also celiacs have a hard time absorbing nutrients they get from their food until they are healed. The worms are going to make that even harder. The treatment is not approved nor throughly researched. Please don't do it.

0

Share this post


Link to post
Share on other sites




For me, I'd rather have worms and be able to eat bagels than to remain gluten-free for the rest of my life. Let's encourage further scientific study...

That's a really sad statement. You'd rather carry around a dirty life sucking parasite in your gut then avoid gluten. That's just sad.

1

Share this post


Link to post
Share on other sites

While I agree we should proceed with caution regarding parasitic treatments for celiac disease, the argument put forth below is incorrect. Even if it were true that celiac disease is caused by genes (this is probably only a small part of its cause), it would not follow that treatment required altering one's genes. There are genetic contributions to asthma, but we don;t treat that with gene-therapy. I think we should be open-minded about hookworms' (and other parasites') potential to treat autoimmune disorders. Sure, it's gross to think about having worms in your intestines, but the side effects (e.g., anemia) are manageable and probably less severe than steroid treatments. For me, I'd rather have worms and be able to eat bagels than to remain gluten-free for the rest of my life. Let's encourage further scientific study...

Since celiac disease effects far more than just the gut and the antibody reaction begins the minute gluten enters the system through the mucous membranes in the mouth I seriously doubt that having worms compromising your intestines is going to help with the autoimmune reaction. Celiac is much, much more than just a gut disease. I would not risk brain, liver, gallbladder, lymphoma, arthritis, and other organs just to avoid a tummy upset from gluten. I 'treated' my celiac with hordes of drugs, for the symptoms for years. If you read my sig you can see how far that got me.

0

Share this post


Link to post
Share on other sites

That's a really sad statement. You'd rather carry around a dirty life sucking parasite in your gut then avoid gluten. That's just sad.

You need to suspend your bias. Far from being "dirty life sucking" parasites, intestinal helminths evolved along with humans (and every other higher animal). It's entirely likely that because of our obsession with sterility and "cleanliness" (a joke if ever there was one) that we've induced diseases like Chron's and celiac that are virtually unknown outside the "developed" world. If you understand how the immune system works, it needs something to do. When we rid ourselves of parasites (which are in many cases essentially harmless), our immune system looks for something to do. In this case, it merrily goes along attacking the intestinal lining giving us the wonderful symptoms of celiac disease.

The research on helminthic therapy for Chron's and celiac, while not voluminous yet, is quite compelling. It makes complete sense from a cellular physiology point of view, and I for one am going to be actively seeking it out now that I know it's available.

Just FYI, the "dirty life-sucking parasites" under discussion are no dirtier nor more life-sucking than the trillions of bacteria that live on your skin, in your hair follicles, inside your nose, inside your mouth, under your fingernails, inside your vagina (if you have one), and from end to end in your intestinal tract. Try killing all those little guys off and see how long you live. I'd give you hours at most, even if it were possible to kill them all, which it isn't.

0

Share this post


Link to post
Share on other sites

Parasitic infections have different stages. When the worm is in an younger stage it is migrating through the body. It is possible that it would reach maturity in a wrong major organ and cause damage there instead of the intended gut lining. During this time your body should respond by making Eosinophils. Eosinophils are white blood cells with (in lay person's terms) a spear normally reserved to fight parasitic infection. Major problem! Eosinophils will damage normal tissue. It can not tell the difference it just attacks. (It is not comparable to a maggot only eating dead, rotting, and/or infected flesh.)The health risk of a parasitic infection IMO would out weigh any benefit.

Search for more information about damage of eosinophils...

Eosinophilic esophagitus

or any other eosinophilic gastrointestinal disorder.

Do you seriously want to risk being put on a feeding tube? :huh:

0

Share this post


Link to post
Share on other sites

You need to suspend your bias. Far from being "dirty life sucking" parasites, intestinal helminths evolved along with humans (and every other higher animal). It's entirely likely that because of our obsession with sterility and "cleanliness" (a joke if ever there was one) that we've induced diseases like Chron's and celiac that are virtually unknown outside the "developed" world. If you understand how the immune system works, it needs something to do. When we rid ourselves of parasites (which are in many cases essentially harmless), our immune system looks for something to do. In this case, it merrily goes along attacking the intestinal lining giving us the wonderful symptoms of celiac disease.

The research on helminthic therapy for Chron's and celiac, while not voluminous yet, is quite compelling. It makes complete sense from a cellular physiology point of view, and I for one am going to be actively seeking it out now that I know it's available.

Just FYI, the "dirty life-sucking parasites" under discussion are no dirtier nor more life-sucking than the trillions of bacteria that live on your skin, in your hair follicles, inside your nose, inside your mouth, under your fingernails, inside your vagina (if you have one), and from end to end in your intestinal tract. Try killing all those little guys off and see how long you live. I'd give you hours at most, even if it were possible to kill them all, which it isn't.

I've done some reading on this too, and it does sound compelling. I would also like to hear from anyone who has tried it. I think I'll wait until it's more proven, if it does get to me more proven, before I'd try it myself.

The only research I could find where it was used for celiac disease found that it didn't work. Does anyone know of any research where it was found to work?

0

Share this post


Link to post
Share on other sites

That's a really sad statement. You'd rather carry around a dirty life sucking parasite in your gut then avoid gluten. That's just sad.

I agree! Far from being a biased answer, this IS what you said it is....sad. Anyone who thinks that introducing a parasite into your gut so you can eat a bagel again, has bigger problems than Celiac Disease. Why would anyone be so attached to a piece of bread? :blink:

2

Share this post


Link to post
Share on other sites

I agree! Far from being a biased answer, this IS what you said it is....sad. Anyone who thinks that introducing a parasite into your gut so you can eat a bagel again, has bigger problems than Celiac Disease. Why would anyone be so attached to a piece of bread? :blink:

That would be sad. Some of us get glutened pretty often from unintentional gluten ingestion. It would be pretty nice to not have that happen anymore.

0

Share this post


Link to post
Share on other sites

I wouldn't do that.

a) it's unclear if it will actually work

B) it may, as mommida says, not stay in your intestines. If it moves, not only will it definitely NOT help, it can embed in your liver or something.

c) seems likely that wherever you'd buy these eggs from aren't actually going to be eggs, or they won't be viable eggs. Something ridiculous like 50% of drugs bought off the internet (not sure where else you'd find such an odd therapy) are fake

d) even if it stays in your intestines, and you start to feel better, and it reduces or even stops your body's immune attacks to gluten, it will damage your intestines and will also absorb nutrients that you still need. Sounds like borrowing from Peter to pay Paul...

e) you have a freakin worm living in you....ewwwwwwwwwwwwww. And you'd know about it. Every little pain or gurgle and I'd be like 'omg, it's the worm'

f) if it turns sour, there's not necessarily a clear cut, easy way to get rid of the damned thing(s). There are drugs, but like most things, its hard to find something 100% effective.

g) I've read quite a few opinions, some from GI's, that say that the vast majority of US citizens already have parasites living in them. I mean, all it takes is 1 bite of undercooked meat, your hands not washed properly once.

You have to take any info about these types of things with a grain of salt. The vast majority of stuff I've read about germ theories and us not having enough of them so our immune system decides to attack something else, is correlational research by epidemiologists, not microbiological studies in controlled environments.

Just for example about what to worry about when thinking about field data, when I was doing reading about iron deficiency on the internet, there was one guy's website that was like hit 3 or 4 or something, who was determined that north american's are all killing themselves from having too much iron. His data didn't seem falsified or flawed in anyway, but his interpretation of it was questionable. He had data from a large number of mexicans who were anemic or something, and found they also had less heart disease, less cancer, fewer health problems overall, etc. compared to americans. But would you say that low iron caused all those benefits? EVEN if it did, knowing the negative of effects of being anemic, would you want to be anemic?

0

Share this post


Link to post
Share on other sites

No, but i am going to get it in about a month!! So excited. Ill let you know how it goes.

For all the naysayers who have commented: Do your research!!

Hi everyone,

I was just wondering if anyone here has tried TSO/Whipworm and/or Hookworm therapy for their Celiac disease. It seems potentially helpful (granted there doesn't appear to be a tremendous amount of research on it). While trying out different diets might ultimately help me, fixing my immune system so I can live a comparatively normal life is far more appealing...

Helminthic therapy

0

Share this post


Link to post
Share on other sites

Clearly you have done No research on this. The worms used re supposed to stay in you for 5 years to 10 years depending on the type. The quantity dispensed is at such a low level that the world health organization does not suggest treatment even if you got them not on purpose.

I wouldn't do that.

a) it's unclear if it will actually work

B) it may, as mommida says, not stay in your intestines. If it moves, not only will it definitely NOT help, it can embed in your liver or something.

c) seems likely that wherever you'd buy these eggs from aren't actually going to be eggs, or they won't be viable eggs. Something ridiculous like 50% of drugs bought off the internet (not sure where else you'd find such an odd therapy) are fake

d) even if it stays in your intestines, and you start to feel better, and it reduces or even stops your body's immune attacks to gluten, it will damage your intestines and will also absorb nutrients that you still need. Sounds like borrowing from Peter to pay Paul...

e) you have a freakin worm living in you....ewwwwwwwwwwwwww. And you'd know about it. Every little pain or gurgle and I'd be like 'omg, it's the worm'

f) if it turns sour, there's not necessarily a clear cut, easy way to get rid of the damned thing(s). There are drugs, but like most things, its hard to find something 100% effective.

g) I've read quite a few opinions, some from GI's, that say that the vast majority of US citizens already have parasites living in them. I mean, all it takes is 1 bite of undercooked meat, your hands not washed properly once.

You have to take any info about these types of things with a grain of salt. The vast majority of stuff I've read about germ theories and us not having enough of them so our immune system decides to attack something else, is correlational research by epidemiologists, not microbiological studies in controlled environments.

Just for example about what to worry about when thinking about field data, when I was doing reading about iron deficiency on the internet, there was one guy's website that was like hit 3 or 4 or something, who was determined that north american's are all killing themselves from having too much iron. His data didn't seem falsified or flawed in anyway, but his interpretation of it was questionable. He had data from a large number of mexicans who were anemic or something, and found they also had less heart disease, less cancer, fewer health problems overall, etc. compared to americans. But would you say that low iron caused all those benefits? EVEN if it did, knowing the negative of effects of being anemic, would you want to be anemic?

I wouldn't do that.

a) it's unclear if it will actually work

B) it may, as mommida says, not stay in your intestines. If it moves, not only will it definitely NOT help, it can embed in your liver or something.

c) seems likely that wherever you'd buy these eggs from aren't actually going to be eggs, or they won't be viable eggs. Something ridiculous like 50% of drugs bought off the internet (not sure where else you'd find such an odd therapy) are fake

d) even if it stays in your intestines, and you start to feel better, and it reduces or even stops your body's immune attacks to gluten, it will damage your intestines and will also absorb nutrients that you still need. Sounds like borrowing from Peter to pay Paul...

e) you have a freakin worm living in you....ewwwwwwwwwwwwww. And you'd know about it. Every little pain or gurgle and I'd be like 'omg, it's the worm'

f) if it turns sour, there's not necessarily a clear cut, easy way to get rid of the damned thing(s). There are drugs, but like most things, its hard to find something 100% effective.

g) I've read quite a few opinions, some from GI's, that say that the vast majority of US citizens already have parasites living in them. I mean, all it takes is 1 bite of undercooked meat, your hands not washed properly once.

You have to take any info about these types of things with a grain of salt. The vast majority of stuff I've read about germ theories and us not having enough of them so our immune system decides to attack something else, is correlational research by epidemiologists, not microbiological studies in controlled environments.

Just for example about what to worry about when thinking about field data, when I was doing reading about iron deficiency on the internet, there was one guy's website that was like hit 3 or 4 or something, who was determined that north american's are all killing themselves from having too much iron. His data didn't seem falsified or flawed in anyway, but his interpretation of it was questionable. He had data from a large number of mexicans who were anemic or something, and found they also had less heart disease, less cancer, fewer health problems overall, etc. compared to americans. But would you say that low iron caused all those benefits? EVEN if it did, knowing the negative of effects of being anemic, would you want to be anemic?

0

Share this post


Link to post
Share on other sites

I was told the FDA has banned this treatment in the us, But you can all ways hop a airbus or drive across the Mexican border.

0

Share this post


Link to post
Share on other sites

I wouldn't try it without some good evidence that it works. I'm not going down to Mexico any time soon.

0

Share this post


Link to post
Share on other sites

As someone who has celiacs and recently had to deal with intestinal parasites , I am shaking my head in disbelief.

That anyone would intentionally inflict that kind of pain and suffering on their body is just plain insane .

0

Share this post


Link to post
Share on other sites

No, but i am going to get it in about a month!! So excited. Ill let you know how it goes.

For all the naysayers who have commented: Do your research!!

After having intestinal parasites I am convinced that I would rather be gluten free FOREVER than deal with parasites EVER again !!!!!!!!!!!

0

Share this post


Link to post
Share on other sites

This was introduced as a topic a little while ago, with citations of people who have tried it. Too bad it wasn't picked up there, but anyway...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,654
    • Total Posts
      921,618
  • Topics

  • Posts

    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
    • I don't have a lot of faith in the allergy testing naturalpaths do. I had them done, but really it wasn't very helpful. Foods that were okay on the blood work- I was still having obvious reactions to. Skin testing through an allergist didn't show up food allergies either. I agree the food elimination diet is a better way to go and doesn't cost a bunch of money. I did a whole 30 diet a while back that could have been helpful if the foods I reacted to were corn, dairy,  soy, grains and sugar- but I react to more than that.  I do need to do a major elimination diet- just haven't gotten up the willpower yet.   
    • Quick search gave too many responses to TGI Fridays but none to TGI Fridays Buns (or similar) so... I was talking with my sister-in-law (Gluten Intolerant) and she spoke highly of a pre-packaged bun from Fridays. I was hesitant but she gave me one (apparently you can buy them from the restaurant?) and I tried it. Since I'm slow to react I won't know about gluten for a bit but I can definitely say it is the closest to "real" I've had in years! Spongy, doesn't crumble while eating a sandwich and tastes good. Color me impressed! I tried to determine the manufacturer or if Fridays actually makes them but I can't locate anything worth pursuing. Anyone have information on this? Thanks in advance.
    • Thanks cyclinglady! I will!
    • You could ask the allergist to give you a starting point for an elimination diet. You would start out with 5 or so foods and then add in one new food a week to see if you react. If you react you of course drop that food. It is a bit of a pain as everything has to be basically single ingredient to start.  My allergist felt that was the best way to go and more accurate than blood testing.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,654
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined